This proposal is in response to RFA-DD-19-001: Research Approaches to Improve the CareandOutcomesofPeopleLivingwithSpinaBifida(SB),andweareapplyingforComponent B: National Spina Bifida Patient Registry. SB is the most common permanently disabling birth defect,withanestimated160,000peopleintheUnitedStatescurrentlylivingwiththiscondition. ThecareofpatientswithSBiscomplex,andrequirescoordinationofavarietyofspecialists.In theUnitedStates,anestimated96clinicsprovidecareforpatientswithSB.However,thereare differencesininterventionsandoutcomesamongclinics.TheNSBPRwascreatedtocollectand studyalargepooloflongitudinaldataoninterventions,clinicaloutcomesandthequalityofcare ofpeoplewithSBacrossvariousclinicsfromtheUS.SBcareandresearchhavealonghistory atBCH,datingtothelate1970?swhenDrs.AlanRetikandStuartBauerestablishedthefirstSB clinicinNewEngland.Overtheensuingdecades,theclinicsteadilygrew,andin2012wewere awardedacompetitiveinternal?Center?designation,resultingintheBCHCenterforSpinaBifida andSpinalCordConditions.BecauseofourrelativelylargeSBpopulationofapproximately800 patients, our established track record of innovative treatments, surgeries, and diagnostic procedures, and our demonstrated commitment as a non-funded site for last several years, we proposethattheBCHSBCbeafundedsiteintheNSBPR.Asanewfundedsite,theBCHSBC willachievethefollowingaims:first,expandtheenrollmentnumbersintheNSBPRandapproach each eligible patient in our program. Specifically, our goal is to enroll and submit data on 600 patientswithSBoverthenextfiveyears.Second,enhancelongitudinaldatacollectiononhealth status, clinical care, and outcomes for consented patients to the NSBPR over a five-year study period. Third, utilize NSBPR data and state-of-the-art clinical research methods to answer hypothesis-drivenquestionsthatalignwiththeresearchprioritiesoftheSBcommunity.Ourdata represent a significant portion of New England?s SB population, and it will be a valuable contributiontotheNSBPRregardingstudyingdifferencesininterventionsandoutcomesamong clinicsanddeterminingthebestpracticesforpeoplewithSB.Inaddition,ourcenterwillbringnew state-of-the-art clinical research methods to address essential and unanswered research questionsthatarerelevanttoimprovingourunderstandingofSBanditsmanagementacrossthe lifespanofindividualswithSB.